Hear Our Voice

We are people with learning disabilities employed, involved and leading a way forward at CHANGE. We can’t respond so quickly as everyone did yesterday to the report: Winterbourne View Time for Change

We have met today and here are some of our thoughts:

We want to start by remembering with deep heartbreak and anger the people with learning disabilities we know who have recently died in institutions: Connor Sparrowhawk, Nico, Stephanie Bincliffe.

It is a criminal offence how Stephanie Bincliffe was treated. She was treated no better than an animal for 7 years. If you treated an animal like that you would get arrested for animal cruelty. It sickens us and we’re deeply angry. It is wrong that we are put in institutions, including institutions in the community. We are unhappy and we feel that nothing improves.

We think the Bubb report is the beginning of a new way. It feels good to be involved in it.But we need to make sure that it has teeth.

We think that if a middle class man went to the doctor with depression or they are self harming they would get support. The doctor will see the middle class man as equal, he or she can understand the middle class person better. He or she respects the person. If you’re poor and you have a learning disability they automatically think if we have mental heath needs we must go in an institution where we are more at risk of abuse.

We feel that we’re often left out, hidden and forgotten. Stephanie Bincliff was forgotten, hidden and left out.

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We’ve been to lots of things for people with learning disabilities but you still don’t include us.We feel left out in the cold because people think we don’t understand anything. Jargon gives professionals power and takes our power away. When we’re in institutions we feel forgotten, isolated and that no one respects us. We feel the same when we’re not included in things about us. We feel isolated even though you’re all talking about us and you want to make things better for us. We don’t feel equal or that we have a real voice.

At our event on June 26th we had a voice. And we took that voice to the top people. They are listening. We think that Bubb and his steering group listened. They listened about our how important our rights are, they listened about employing us, they listened when we said we want more power. We helped them to understand things better by sharing some of our experiences. These meetings are good.

We think that things are connected. We think that having the Charter of Rights that underpins everything is really important and making it into a Law would make a difference to us. At the moment many people with learning disabilities don’t know how to complain and get pressurised not to complain. So how would a Charter of Rights or law about our rights make things better for us?

This is how we believe we can really have more power:

We need to break down barriers with professionals. We think that you often think we’re like children and we don’t know anything. We’re not equal with you and we should be equal. At the moment we are at the bottom of the Ladder of Power, underneath you and we need to move up.

We need to have work like you do co working to improve our lives like you

We need to be role models empowering other people with learning disabilities to have a voice.

For us having a learning disability feels like a label and a weight round our necks. When people see the label they think we can’t look after ourselves and we can’t do things, that we’re not very intelligent. We feel that this is often your image of us. When people don’t know we have a learning disability they treat us with respect and when they find out that we do they talk down to us. This makes us feel really angry and in our minds we’re saying ‘F*ck Off’.

We’re put in special schools, they say we’re thick, we HATE that word… and we can’t learn anything. They think we can’t have a job, have kids or do nothing for ourselves that’s our label. We think that its this label and the attitudes attached to it which mean we end up in institutions. People look down on us and we live with this label every day. We want people to look at us in the eye as equals.

We’re just a number or a statistic to commissioners, its heartless and its like we don’t count. We want to work as equals with commissioners and with you.

Actually we can do things for ourselves but we need to prove ourselves even to the people who are passionate to support us. Its a battle we’re fighting uphill. Our speech might not be clear, our disability effects us. Sometimes we can have 2 labels weighting us down.People without learning disabilities prefer other people who don’t have learning disability.

But……we are winners and role models in our own right. We want to push back the barriers. One of us supported 2 young women from Moldova to have a real voice and speak up. We can stand up for others.

If you talk about people with learning disabilities we’re never there, you need to include us and employ us as equals. Lumos are giving people with learning disabilities a real voice to speak up and we’re supporting them to close institutions down.  You can’t close institutions down without supporting us to have real power otherwise as a community of people with learning disabilities we will always be at the bottom of the Ladder of Power with no role models and no peer to peer support.

If all the institutions shut down and people with learning disabilities are properly supported in the community, if we don’t have real power through paid proper jobs we’ll be at the bottom of the Ladder of Power. We are passionate Pioneers like you, striving for a new way forward and we want to work with you all to change things. We want to work with all the self advocacy organisations, people with learning disabilities, Justice for LB campaigners, Norman Lamb, Simon Stevens and others to come up with action for supporting us to live as independently as we can, have jobs and be part of our communities.  This will give us the most power .

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Breaking Down Barriers

By Nada Heyari/ European Project Co-ordinator at CHANGE.

Two weeks ago Shaun and I went to Moldova to work together with Lumos on their de-institutionalisation activities in Moldova.

We worked on loads of different things including:  workshops on self advocacy skills for child participation groups from inclusive education schools, we had discussions with support teachers on how to make information accessible, we ran a training session for staff of small group homes who wanted to know how best to support and empower the young people in the homes to live independently when they leave the home. We also gave a presentation on public speaking skills for a child participation group in one of the schools, as part of preparing two self advocates from that group who will participate in a big conference on De-institutionalisation in London.

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Before I came to work for CHANGE I worked in Jordan, my home country, Syria and Lebanon, on empowering different groups of people to advocate for their human rights. I often find myself advocating for human rights even when I am outside of work – some people might say I am a trouble maker, but the way I see it is that I just cannot stay quiet when I see something happening that goes against any human right. I must speak up!

In Moldova, this is what we were trying to achieve: we were trying to empower the children to speak up for their rights- whether they are disabled or non disabled. I felt the children seemed very shy and reserved, and they weren’t sure how to react to seeing an adult with a learning disability training them or giving them a presentation.

When Shaun started talking it was amazing to watch the faces of the children!  Their expressions went from unsure, to a mixture of full concentration and then admiration as Shaun shared his story. Shaun explained to the children how he had no confidence growing up, how he was bullied, and then how with the right support he became more confident. He shared with them how he feels about being a role model to lots of children and adults with learning disabilities. It was clear that the children were really inspired by Shaun!

One small boy, the most outspoken in the group said he found it amazing that Shaun had travelled to so many different countries.

The inspiration went both ways, as Shaun and I were both inspired by the children with their ideas on self-advocacy and what it meant to them. They spoke about making things better for themselves, their families and their communities.  Shaun said to them that they already showed signs of becoming great self-advocates and that he felt they were very passionate, confident, and can do anything!

Shaun said to me after the workshops: “It was amazing to see all these children who barely know each other work together so well during the training and making plans to advocate for creating a park that is inclusive and accessible to everyone in their community!”.

On the last day of our visit we had a discussion with two young self-advocates who were preparing to participate in a big conference in London on De-institutionalisation.  Shaun was supporting them by giving them his advice on how to speak in public.

While Shaun was doing that I was transfixed by two young children sitting at the other end of the table we were at. The girl was disabled, the boy wasn’t. For over an hour they made puzzles together. Whenever they finished one the boy asked the girl whether she would like another one and when she shook her head in agreement he would quickly get up and bring another one (the girl was physically disabled) got another one. Once he had made sure she was ok with his choice they started to play again. What I really noticed and what touched me so deeply was that they were being completely unselfconsciously natural and respectful with each other. This is one of the most wonderful impacts of inclusive education.

This is the way nature intended us to interact and be with each other.

This also made me think of what we at CHANGE always refer to as peer-to-peer support. In a way, the interaction between those two children was a real example of peer-to-peer support and how it can work. The boy without the disability was playing with the girl with the disability and supported her when and where she needs support. But mostly they were equals. Two children making a puzzle together.

What I was so impressed with was that the children we met in Moldova all go to inclusive education schools that adopt this structure of pairing up a child with a disability with another child without a disability that volunteers to support them. These volunteers learn how to support children with disabilities and become their friends.

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When someone asked Shaun why he thought inclusive education was so good for Moldova he said: “Inclusive education is good because it breaks down barriers between children and that is a good thing for the future. When children with disabilities mix with children without disabilities they don’t see the disability anymore, they see a human being, and that is important for future generations.”

It is clear that Moldova is a very poor country but at the same time has many people in it who are very passionate to learn and to develop and to make their country better. No matter whom I spoke with, from school, principles, teachers, Lumos staff, everyone agreed that Moldova’s government officials, social workers and teachers all believe in the importance of de-institutionalisation and inclusive education and are putting all their energy and passion into making Inclusion happen.

When I heard this,  I realised that I have also seen such passion for development before in Jordan and in Syria, two other countries which are also struggling to develop.

From my experience of working with grassroots organisations in both those countries, it is often when people have so little resources and are passionate about changing things for the better that they embrace any support in that direction and put all their energy into making the best of that support.

I have always felt that when working with people who are so eager to learn, I end up learning so much myself in a way that enriches my personal and professional experience in a very special way. I have found working in environments like these really exciting and rewarding! It may be very hard work but the results are always very visible and they are always a great way to remind me why I love doing what I do.

When I started to work for CHANGE I had never had the chance to work with people with learning disabilities or to work in a co-working model like the one that Shaun and I work by.

I have learned so much from this experience and it warmed my heart to see such young children in Moldova were instinctively co-working so wonderfully together!